Lucas & Menkes Disease: From Diagnosis Day to The Disorder Channel

After birth, Lucas spent ten days in the NICU due to a skull fracture he was born with — a window of opportunity for him to be diagnosed with Menkes Disease that was missed. His parents noted developmental delays at 4 months and regression at 8 months. At 9 months, Lucas finally saw a geneticist, and at 1 year of age he was diagnosed with Menkes Disease and given a life expectancy of 3–10 years. Lucas’ father Daniel describes Diagnosis Day as the shock event, the worst day of his life. He also shares how he and his family adjusted and found joy in their time with Lucas, who passed away at age 11 in June 2020. A filmmaker, Daniel co-founded the Rare Disease Film Festival and launched The Disorder Channel, available through Amazon Fire and Roku.